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Title: Brand New Here and I Need HELP!!!!! Post by Lizbutt on Oct 22nd, 2003, 8:17pm This is my first time here, and my boyfriend (who suffers from these dreadful things) is the one who sent me here. My name is Suzanne and Andrew is my boyfriend on and off for the last year and a half. I don't know how many times he's gotten these things and there is no way I could ever give you a description of how many different types of medications he has tried... All I know is that I am going nuts and feeling like the most selfish person in the whole world. I don't understand these headaches at all. Andrew will be fine for a couple of months and then our whole lives are just all messed up by these things!! He'll get up to 10 a day - on average about 5 - and he ends up breaking up with me over the stupidest things. He feels horrible about himself because he can't work, he can't sleep, he doesn't eat well, and he won't go to the hospital EVER!! Like I said, though, he will go months without them and then they start up again. What in the heck am I supposed to do? Here is the part where I get whiney and scared... We have had the best times together and I don't want this thing to end, but he is so down on himself he doesn't think he can be with me. I am so scared of losing him that I end up apologizing for things that I honestly don't think I need to apologize for. Example: Today he was going to come over after he dropped his kids off. They delivered oxygen to his house in case he gets a headache and it is too big for him to bring it to my house. So he isn't going to come over and I understand that. But I am disappointed, so when we got off the phone I told him that I would talk to him tomorrow. He said goodbye and so did I but I didn't say "I love you" which is abnormal... He called me back and freaked out and almost ended this thing with me. I ended up apologizing for being disappointed and I don't think that I should have to do that for him to stay with me... Gosh, I am a total mess and I am being incredibly selfish because I wanted to spend the night with him, but at the same time I completely understand that he can't and I hope that the oxygen will work for him.... Ug... I don't know what to do.... HELP!!! One last thing - I promise this is the last - his doctor wants to try botox with him. I am scared to death of this because it seems like she just doesn't want to deal with him anymore. He called her yesterday and the first thing out of her mouth was "I don't feel comfortable giving you any more percocet". He wasn't even asking for any. He was asking for help. Then she literally laughed at him - I cant remember what he said to her - loud enough for me to hear it throught the phone. He took his sister with him today and she is trying to talk him into the botox with no real knowledge of the side effects, outcome or reason for doing it... Does anyone have any experience with this treatment? Sorry this is so long... I'm so scared right now, I was grateful he gave me this website... Any help would be greatly appreciated. Suzanne |
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Title: Re: Brand New Here and I Need HELP!!!!! Post by Prense on Oct 22nd, 2003, 9:06pm Suzanne, Take a breath...relax for a moment. Please trust me when I say that this is about the best thing you could have done at this time. I am not a supporter, but I suffer from chronic CH. My fiance' has been a "text book" supporter in my opinion. Fortunately, we have not gone through this as you have described, but I can see how it could have easily went that direction. First and foremost, success is ALL about attitude. Success with CH for you and Andrew as well as success with your relationship and life in general. The attitude that April and I have is that we are not going to be defeated by this...PERIOD! That is easy to say, but day-to-day it can become extremely difficult. It has become a way of life for us now...kinda makes it easier to stick with. It is important that you know as best you can what Andrew goes through...it is EQUALLY important that he understand what YOU go through. I have no experience with Botox, but I have read numerous posts here about it...I'll yield comments to those who have actual experience. Your first task is to get Andrew here and have him introduce himself as you have done (if he hasn't already-don't recognize the name) If CH is affecting him as you describe, he has much work to do. Don't worry, we can get him off the pity-pot. ;;D Fill in the blanks (or have him do it) You did not mention if he has actually been diagnosed with CH, if he is seeing a neuro, had a CT, MRI... Unfortunately, episodic sufferers do not normally have a large window of opportunity to find out what preventative meds work for them. He should be seeking that like the holy grail while in cycle. Abortives are nice, but not getting an attack in the first place is the goal. I wont go into what meds work for many of us and what doesn't as I do not want to toss a bunch of ideas at you that he has already deemed ineffective. The O2 is a GOOD thing though. Check out the "oxygen info" link on the left and make sure that is the route he is taking. Docs are resistant to prescribing items like non-rebreathing masks and a high enough flow to be effective. Get educated! As far as portability for O2 goes...he should be able to ask the medical supply folks for an additional tank, regulator and mask...an "E" tank is quite portable (handles about 5 attacks). It is not something you want to drag to the mall with you, but it is a viable option. Even though he wasn't asking for percocet, it is a GREAT thing the doc didn't prescribe it. Narcs do jack for CH. Keep on whining, venting...whatever you wish to call it. Read all the info here you can. This is a very important step you took here...he should be doing the same. Hang in there...it will get better! Regards, Chris |
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Title: Re: Brand New Here and I Need HELP!!!!! Post by Jackie on Oct 23rd, 2003, 6:53am Suzanne, My husband, Blake, is a chronic clusterhead....we've been dealing with this for many years. Life is manageable and so is this malady but it takes hard work and dedication. Chris has given you some wonderful advice...perfect actually. You really need to encourage Andrew to join this group and tell us more about his history (treatments, meds., etc.). There is a wealth of information on this site and on OUCH. Education is your very best defense....knowledge is power. It's difficult to support sometimes. We have to put personal needs and wants on hold and concentrate completely on fighting the beast.....together. As a supporter there will be many times when you must be the strong one. These HAs suck the life out of the sufferer...not only are they painful but the side effects of depression, sleep deprivation, etc. are horrendous. Always remember that once the cycle ends the good times do come back and life can be sweet again. My only additional suggestion is that you and Andrew need to sit down, talk this situation over and then gang up on the beast.....fight like all hell for pain free times. You can have a life together if everyone is willing to do their part....understanding is key. Stick around and talk to us....we'll always do our best to help. Good luck.... Jacks 8) |
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Title: Re: Brand New Here and I Need HELP!!!!! Post by Margi on Oct 23rd, 2003, 10:23am Hi Suzanne, I'm sure any one of us long time supporters could have written your very words when we were first introduced to the cluster headache lifestyle. Do you run screaming and never look back? Or do you make that decision to stay and help him fight? Suzanne, that's totally up to you. There's nothing glamorous about having to live with cluster headaches, I won't sugar coat it for you. It's damn hard work sometimes. It's scary. It's frustrating. It's heart breaking. It's maddening. It's a lot of things. Only YOU can decide if the feelings you share with Andrew can surpass all those things. I've been with Mike for 17 years, married almost 14. He is an episodic clusterhead and now goes into cycle every couple of years - his cycles are lasting longer and longer now, but so are his remissions, fortunately. :) Remissions are blessings only episodic clusterheads get - the chronics don't get breaks like that. In the early days, Suzanne, these attacks scared the hell out of me, too. I had NEVER felt so bloody helpless in all my life. I, too, wanted him to go to ER but now realize that that isn't going to do much other than make ME feel better that a "professional" is in charge and that I'm not ultimately responsible if his head finally DOES explode :o. I've come to learn that we - the cluster folk - often know more about this affliction that 99% of the ER staffers. I know that Mike is MUCH more comfortable in his own home surroundings when he's getting hit. The LAST thing he wants is strangers seeing him like that. I can totally related to Andrew not wanting to leave his oxygen tank - (just one question for you though - why didn't you go over to HIS house instead? Even just to sit with him for awhile and comfort him in knowing that it's ok that he needs to stay home. Just my [smiley=twocents.gif] I guess.) You're absolutely right - selfishness is not an option for a cluster supporter. We do, at some points in a cluster cycle, lose our identities and become slaves to the Cluster beast. It does take a certain kind of personality to be able to adapt to that lifestyle, for sure. When clusters are present, life as we know it grinds to a halt around us. (I'm speaking for episodic sufferers and supporters - the chronic people seem much better able to take it in stride than we do. They all have MY utmost respect - I honestly don't know how they do it!) Suzanne, we have a Family Services Team in place here - a group to help supporters and there are a few pages written over there that will hopefully help you to understand the big picture. The link is at the bottom of my post here. Please read it. And please do get Andrew to visit here - he needs to know that what he's feeling these days is perfectly normal and felt by most clusterheads at some point in their lives. And ...exactly right - percocet or any narcs won't help. Get him into a cluster knowledgeable neuro a.s.a.p. There is a list of these doctors over at the OUCH website - first menu on the left above the map. Do it, Suzanne - it's the biggest gift you can give him. He may not have the energy at this point to do this research for himself. |
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Title: Re: Brand New Here and I Need HELP!!!!! Post by Jackie on Oct 23rd, 2003, 10:41am PS....what Margi says More words or wisdom from our #1 supporter and our leader... :) Jack 8) |
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Title: Re: Brand New Here and I Need HELP!!!!! Post by cathy on Oct 23rd, 2003, 4:52pm Suzanne I could have put it better myself, but this lot beat me to it... ;;D Look forward to getting to know you..... Cathy |
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Title: Re: Brand New Here and I Need HELP!!!!! Post by Ree on Oct 24th, 2003, 7:35am all I can add is that we are all here for you... We've walked in your shoes... and we care... Good Luck and Peace to you while you go through this torment... ree |
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Title: Re: Brand New Here and I Need HELP!!!!! Post by lois on Jan 14th, 2004, 9:03pm Hi: There is no way to offer you better advice than those given before me. I understand the pain you're going through- I went out with a CH sufferer for 3 yrs myself. The only thing I will say, is that in a way, it's equally as hard to be a girlfriend to a CH sufferer... in a relationship where nothing is "unconditional" or absolute, this will definitely make the relationship scary and uncertain even when he's not having a cycle. It's really hard and hurts like hell- but every time you feel like you're alone and helpless, remember why you were going out with him in the first place and how lucky you are to have the priviledge to take care of him. My ex has since moved on and going out with somebody else now. Even though i've moved on myself (pretty much), I find it harder at times to have to sit here and wonder how he's doing, who's taking care of him when he needs that icepack at 4 in the morning, who's driving him when he needs to go to the ER than when I was able to be there to be called upon when he needed. At the end of it all, it just boils down to how important he is to you. And that it means a lot if Andrew trusts you enough to let you see him in some much pain. All the best..."Courage!" as the French would say. :) |
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Title: Re: Brand New Here and I Need HELP!!!!! Post by Woobie on Jan 15th, 2004, 3:25am HI !!!!!!!!!!! I'm WOOBIE. :-*. Late again! I cant add anything more than anyone else did... listen to them! They are wise. Just wanted to say Hello and Welcome! Hope you stick around! And DO get yer man signed up here... if he has clusters, this is where you both need to be! peace- tina :-* |
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Title: Re: Brand New Here and I Need HELP!!!!! Post by meljohn on Feb 4th, 2004, 12:26am Hey there Suzzane first - what everyone else said! Particularly what Margi said about there being no room for selfishness. I don't think that this is the type of thing where you can give less than 100%. it gets really hard but the rewards are worth it (you can read Ben's post about me if you need proof - my best mate) like you, my partner suffers from CH. I've been to this site quite a few times but have not regestered before today. I gotta tell you my heart goes out to you. My partner has suffered episodes since he was 15 - we've been together 4 years and he's recently had his worst cluster. normally his headaches (when they come) have been limited to around 1 every other day but his most recent cluster as brought his suffering to a new level with him experiencing up to 3 or 4 a day and for the first time, on occasion, his medication failed to work. He takes imigran - preferably injections but the cost can be massivly prohibitive ($135 for 2) or the nasal sprays. You didn't mention whether your partner had been diagnosed and I'm not familiar with the medication that you said he's been taking but if its like imigran it can actually cause depression - one of the side effects if you take enough of it. I read someone else's post about the injections and how they find them hard to take - Ben tells me that the way they make him feal is incredibly terrible and if he has to administer them himself it takes him quite some time to work up the courage. If I'm around I do it for him. I'm not so great with needles but the autoinjector makes what you're doing less realistic. I guess what I'm saying is I find it important to do what you can to help while trying not to do too much. After 4 years we have quite the routine worked out - Ben wakes up with a headache and I either give him an injection and go get an ice pack or he takes a nasal spray while I get him an ice pack and make him disguistingly strong cordial to take the taste away & I lie silently next to him, ready to get anythign else that he needs, until he stops writhing around and goes to sleep. this cluster in particular seemed to bring about quite a lot of personality changes in Ben. He became noticibly depressed and lost weight, was incredibly moody and would frequently fly off the handle at little or no provocation. I guess I'm lucky in that I know him well enough to know this is not part of Ben's normal personality - I just remindmyself that i havn't done anything differently and that he's simply upset because of the unrelenting headaches. I know he doesn't mean it and I think that really what you need to do is just try to be as supportive as you possibly can and I don't mean just while the headache is happening. Ben became incredibly fragile and I think its important to remember that while your partner may not have had a headache for a few hours or days, they are living with the anticipation of the next one occuring. I don't know exactly how I cope - I tend to tell the world, even though I know that they have no way of possibly understanding but also so that they know the reason when I dash home from work with no notice. Ben has recently started taking verrapamil (spelling?) and hasn't had a headache since however this also corresponds with other good news that eased his stress levels significantly. At the end of the day who know why they stopped, we're just glad that they did! it does get better, although your heart will probably break a thousand times in the process, you just need to hang in there mel |
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Title: Re: Brand New Here and I Need HELP!!!!! Post by Little Deb on Feb 10th, 2004, 7:24pm Wow!! This is my first time at the supporter's section... I am really impressed and excited to be here. I will be checking it out from now on. I am episodic, every 2 years for the last 25. I am so happy to see all you supporters here. I have been tossing around a thread in my head that I was thinking of posting here... Just wanted to say thanks for all the words of wisdom you have offered to Suzanne. I had wondered how to answer her questions....then I read your responses realizing....no need for me here.....you all have it all together!!! Big Hugs.....Little Deb |
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